Daily life and managing iritis

[ksamaras]

Hi again everyone.
I wondered if anyone has any thoughts to share about things they've found helpful in coping with iritis in day to day life, managing work, dealing with the stress of living with the disease, etc.
I've evolved a few strategies myself over the years (eg trying to minimise stress; reducing my work hours during an attack when I can; having a range of glasses and dark glasses to select from depending on the condition of my eye at the time, and so on).
Perhaps the most important thing I've learned is the necessity of being proactive with doctors in terms of my medical care (eg a previous specialist had me in and out of the surgery in about 2 minutes, and typically didn't even measure the pressure in my eye - this is just not good enough. Fortunately I'm now under a thorough and careful doctor).
There is also the issue of explaining my condition to others: I work mostly in a face to face customer service role, and find myself having to explain mutiple times a day why I'm wearing dark glasses, which can be quite wearing.
I'd be very interested in any fellow sufferer's tips for surviving iritis on a day to day basis.
Thanks for listening,
Katrina

[radlynmendoza]

Hi Katrina,

Why do you have to explain why you wear the dark glasses? I wouldn't do it and just try to roll with it. Four years ago when I got my first bout, I had to wear sunglasses indoors. When I met with clients (I'm a lawyer), I would apologize for the glasses. It got so tiring. But who wants to hire a lawyer with sunglasses on! Lol. I eventually stopped explaining because on top of everything else, I didn't care what clients thought about my glasses. Fortunately my glasses stage lasted for only a couple of weeks. Is there any way you can have a co-worker explain the glasses? I think if I had to do dark glasses indoors again I would have my receptionist tell the client why - not sure if you have this option. Good luck!

[ksamaras]

Hi radlynmendoza,

Thanks for your post. I'm a librarian working in the public library system, and clients will often simply ask me outright why I'm wearing dark glasses inside the library. Also, my iritis/uveitis attacks tend to be severe and long-lasting eg my last attack before this current one lasted 15 months. It gets to the stage where regular clients ask after my eye - kind, but a constant reminder of my condition, and one which tends to require a response, which as I say can become a bit wearing.

I think your attitude is great, and the idea of having your receptionist handle it (should it arise) is great also.
But sincerely hope you don't need to do dark glasses again!
Best wishes,
Katrina

[radlynmendoza]

Hi Katrina,
For some reason I couldn't figure out how to go to your old posts. I'm glad you feel like you're getting the proper care and hopefully your drs figure out the recurring bouts of iritis. This is only my 2nd bout, diagnosed about three weeks ago. It got better and got worse got better and now worse again. So frustrating! Thankfully we have a community here to learn and vent!

Good luck, and I hope you feel better.

Best regards,
Radlyn

[ksamaras]

Hi Radlyn,

Thanks for your post. How are you? Is your iritis improving after the frustrating roller coaster ride of better-worse-better-worse etc...? I really hope so.

I'm an old hand in iritis terms, having suffered a number of attacks since 1984. My attacks have typically been spaced years apart, but they are severe and long-lasting. I was finally properly diagnosed as suffering from HSV1 (herpetic) iritis/uveitis in 2006. This current attack started 11 June - so I've just passed my 3 month 'anniversary'. Sick of it already!

I'm on anti-viral medication plus pred forte - now down to 3 drops per day. Eye seems to be doing ok - my main issue at the moment is frequent subconjunctival haemorrhages (a side-effect of the pred forte, which weakens capillaries in the eye). Not medically significant or endangering to vision, but painful and disfiguring and horrible!!!!! The bleeds typically set in around 3 months into an attack, and are really yuck - the last thing anyone with iritis needs is to look in the mirror and suddenly find their eye looks much more inflamed...scary - even when I know it's not a sign of the disease, but a haemorrhage.

I'm also dealing with a lot of anger toward my previous specialist, who didn't treat me with antivirals, but relied on massive doses of pred forte, resulting in cataract and issues such as the haemorrhages. Just not good enough!

Anyway, thanks for listening. I sincerely hope you're reaching the end of your bout of iritis - wishing you and all sufferers clear, quiet eyes.

Katrina

[Boroboy]

Katrina,
I'm a bit late with my reply.
Sorry to hear that your suffering at the moment from iritis.
I myself suffered from my first ever iritis flare, within my right eye. Over 5 years ago now. Since then I have had to wear cat 4 wraparound sunglasses, both indoors & out.
I too work & also find it hard at times. I tend now, not to mention my glasses, unless someone asks. I then say I have an eye condition, try to leave it at that. Yes I do realise, it's a vanity issue too. I myself get times where I'm sick of wearing them on a daily basis too.
I also find the summer months worse, not that we get much of a summer here in the U.K
When driving within the day time, I wear cat 3 glasses. Which is legal within the U.K. Very occasionally when I'm driving at night for short periods of time, I wear yellow tinted glasses (cat 1), seems to help a little with headlight glare. I tend to stay away from night driving, as much as possible. Not always possible, due to work.
I now have the beginnings of a cataract within my effected eye & I am now considering a cataract operation on a private payment basis.
I live within the UK & have seen prof Ayliffe recently, based at London, on a private basis. It was well worth my while. I have seen lots of other specialists over the years through the NHS, which have been less helpful.

I do know what your going through. Just try to be yourself & stay as positive as you can.

Best wishes.